Ileostomy

I would like to share tips, secrets, anything that helps intimacy be more alluring to others.  Dont be shy, I need answers.

Hi everyone! My name is Nicole. I am 30 years old. I was diagnosed with UC when I was 16. I have been struggling this entire time, switching medication and diets, trying to find something that will work. And unfortunately, nothing has helped. I am currently getting Entyvio infusions every 4 weeks, taking Lialda every morning, 9 fiber pills a day, and sometimes maxing out at 8 imodiums a day. I have been having sporadic bowel incontinence since my diagnosis, but it has gotten so bad over the last 2 years that I no longer have any faith in m...

Looking for feedback from those who have ileostomies and especially anyone who had a colostomy that was changed to an ileostomy. A little over 6 years ago I got a permanent colostomy. But now my gastro doctor said because of a bad stricture and polops in my bowel he is recommending to my colon surgeon that it be made into an ileostomy with most of my bowel removed--right now I have about 40% of my bowel left. Questions: Anything in particular, any suggestions or ideas you have that will help me adjust to an ileostomy? In particular I a...

Due to recent events in my life, have been feeling the need to go out and get absolutely sh*t-faced! As previously  I  have only had a glass or two of wine with dinner (and had no problems) was wondering if I have a  few more (and  I'm talking  the hard liquor lads here...Jack, Jim and Jose!), that my ileo will freak out and not be able to handle it?! I am not planning on making a habit of it, but am in serious need of becoming "comfortably numb" just for awhile.  I n...

?i have had an ileostomy for 51 years. does anyone have any information on long a person has lived with an ostomy? Also, any information about conditions that are caused by having ileostomy for so many years would be appreciated.

Hoping someone out there can give me some words of wisdom.  I had ileostomy done 2 1/2 years ago.  Due to chrones and my colon exploding in seventeen different biopsied pieces, I had a Very Good outlook of my surprised surgery after a colonoscopy, mainly cuz I was no longer in awful pain 24/7 anylonger.  However, my great mood has slowly turned into a very depressed (even tho I fight it) and angry mood.  I have continuiosly had leaking problems.  I have talked to my dr. and he sends me to t...

What foods do you eat? Also I don't have a large intestine so that compounds the problem. What foods to stay away from that cause gas and how does the gas come out, does the pouch expand out, I know NOTHING about this. Consult is Fri-13th, yeah!!!! I dread this and also is anyone expericing acid..... I have alot of anal acid that keeps me raw and in pain, do you think or does anyone know if the acid will be like it is now with an ileo? Thanks to all.

Well friends once again I'm in need of information. A little background, two months ago I had to buy new jeans so I got them a couple of inches larger than normal, next I put on my braces to keep my pants from falling to my knees. As i sit here now, no braces, no belt, top button open. This started about two weeks ago after getting some sharp pains above and below the stoma and a circle about six or seven inches in diameter and has swollen outward about an inch and a half, hard to tell. can anyone tell me if that's the way a hernia starts ...

Hi ...i had a emergency ileostomy done in feb 2012. I was on life support and in a coma in icu for over 4 weeks. It was a shock to wake up with this bag hanging off me....they said they could do a reversal....in a few months... Well a few months turned into 15 months....because i had a infection and plus the surgery was scheduled 4 times and cancelled....twice by the doctor..to put a emergency in my spot and twice i made it to the operating room only to have it cancelled because of my lungs... I was very nervous...because i had read all...

Hiya everyone. I am soon to have surgery for ulcerative colitis. I'm just very confused which surgical option to choose.  - I can either choose to have a total colectomy with removal of rectum and anus and have a permanent bag. - I can have a j-pouch formed and have a temporary ileostomy while it heals and then have it reconnected later on.  - or if undecided they said they can leave the rectal stump, remove the colon and then decide a year down the line whether I want to keep the ileostomy permanently or have it reversed. I ...

I have to have one last surgery to take out the rectum (can't leave it due to cancer risk) as I've decided not to re-attach.  Haven't had any issues since my ileostomy 4 years ago and don't really want to go through the recovery and possible complications of re-attachment. The main problem is that I am healthy and have to go in for surgery which will make me feel crappy.  It's easy to go in if you're sick because the point is to make you better.  This will make me better in the grander picture but I'm worried ...

I am looking for advice on what I can eat that won,t go I right through me. I had my ileostomy surgery 8 weeks ago and can not seem to gain any weight. I have tried protein shakes with a banana, jelly beans, crackers, etc. I had lost over 40 pounds when I was sick and have only gained six pounds. Any suggestions would really help. Please and thank you.

I am trying to find out how long everyone had to wear diapers after their surgeries. my boyfriend had an ileostomy and is still having issues with anal leakage. he is still in diapers 8 weeks post surgery. please help

Hello does anyone know what food to stay away from or what is good. I only had this done so I am all new to this.

i seem to always be hungry and since i cannot eat raw fruits and veggies..does anyone know what to snack on?? i have an illiostomy so whatever goes in comes out pretty quick  thanks< >

I had an attempted colostomy reversal, they found yet another leak and now I have an ileostomy.  I am having trouble getting my bag on before any output and it's made the skin below my stoma very red and raw.  Anyone have tips or suggestions? Thanks in advance!

I have itchy skin under the tape around the appliance. I have had the ileostomy for nearly 3 years. I have no leaks and the itchiness is not under the flange. It is under the tape. Any ideas of what I can do? I also use fungal powder before installing the appliance. Is it possible I have developed an allergy to the tape (part of the Hollister appliance)?  

I had an ileostomy in April 1983, then in October 1987 I had a (BCIR) Barnett Continent Ileostomy! Does anybody out there have one? I was in Mississippi and met 2 people; however, I cannot find them? Freka and John Busan?

I haven't posted much here in my seven month journey as an Osteomate, but I have read a great deal.  There is so much wonderful support here and, alas, much need for support. My colostomy was the result of diverticulitis, an exploding intestine, and a severe case of stuborness while I somehow decided that intense pain would just go away...even though the pain got to the point where I had little realization of the passing of time.  Were it not for my dear partner who stood over me and insisted (loudly and somewhat rudely, I ...

I am having a very difficult time dealing with living with an ileostomy bag. I am not a candidate for a J-pouch and I gave up on love because who would want me like this. My surgery was on NOv 2018. Prior to that I have been living with Ulcerative Colitis since 2001. I am undergoing chemo for stage 3 rectal cancer, and if anyone I didnt tell anyone they would know by appearance. How did you overcome the challenges living with a bag? 

Just over a month since my perm ileostomy. Have had moderate to heavy anal discharge and thought it was the rectum healing/weeping (surgeon left a rectal stump) or an infection. Saw surgeon last week ... he's saying it's the UC in what's left of the rectum . I see my GI specialist tomorrow. Darn - I still have to use a heavy menstrual pad and am back on the Salofalk suppositories. And I'll still have the unpredicatbility of flares. Pre-op, my flares were months long. I was SO stoked that my UC would be a thing of the past. Of c...

Can I ask what others experience has been with weight gain (or lack thereof) following an Ileostomy? I had my Ileostomy coming up to a year ago (it will be a year in May). This was after suffering from an acute attack of Severe Ulcerative Colitis. Before the illness I was about 75 kgs. I'm 5 ft 9, so I wasn't a muscle man to start with, but was a fairly respectable weight. After the operation and a combination of the illness, loss of appetite and NHS food I was down to 55kgs. Not at all a healthy weight! I had the summer of work to...

I was wondering if anyone has any experience with wearinig their pouch sideways.  I use a two-piece pouch system.  My stoma is located in a kind of different area - pretty much in the front/center of my abdomen, just to the right and above my belly button.  Therefore, the pouch hangs pretty much down the center of my body from just under my bust to my crotch.  Normally, I wear long blouses to cover past the bottom of the pouch.   I was thinking, though, that if I wore a blouse that wasn't ...

Hello everyone......i just want to complain for a bit.......ive had a colostomy done in january 2010 and almost lost my life.  I had that reversed in september 2013 because the surgeon felt it would give me back life....im really not sure why he said that because i absolutely loved my COLOSTOMY!!! Now fastforward to present day i had an emergency surgey done february 2015 and had all of my colon removed and the surgeon gave  me an ILEOSTOMY....well let me tell you I HATE THIS THING!!!! I cant eat anything without it passin...

I have had my ileostomy for three years now and still have not gotten used to it. If I eat after 2pm in the afternoon I am up all night having to empty my bag or in fear that I will have a break because a thicker consistency will break through the barrier. This ensures that I only eat once a day really and I am constantly hungry. Also, I have yet to figure out which product will work to make sure I don't have breaks due to thicker output and how to ensure my skin around the stoma is not sore and burining from a very liquid output. My stoma...

I've had my ileostomy for a year and a half now and feel I haven't to accepted or came to terms with it. How would people advise I try to accept it

Hi all, About 8 months ago, I (ilostomy '09, proctectomy '11) started hgaving some intermittent, occasional pain to the right of my ostomy (about 1 to 1.5 inches from the stoma). Saw GP who seemed to ask the right questions and said it was probably muscle related (ostomy working fine). I had had a particularly active few months ... so with my poor abdominal strength/muscles, his diagnosis seemed to fit. Slowly got worse. Pain is worse (knife like) and now hurts with any movement. Sitting or laying down ... no pain. When I press on th...

How does a person adjust with an iliostomey ?? Ive had this over a year now and it doesnt seem to get better. I think sometimes how id love to be the person i was before. I do have a chance of revesal but im so scared to go thru this again. When I had this surgery, which was a flute from a sm bowel obstruction and a busted appendix, I remeber how I had to regain my walking skills again and I couldnt eat without being sick to my stomach.  Also had a bllod clot to rt lung. I had theraphy for 4 months to finally walk again and be a...

I wanted to put a quick update here to let those interested know how I'm doing since my ileostomy reversal 3 months ago. I had good progress for the first 2 months but the past 3 weeks seem to have gone backwards.  I'm still in a lot of pain and spending too much time in the bathroom (8 - 12 x daily).  I am housebound all morning and if I need to go out at all, I fast beforehand.  Gas and cramping are a huge problem! The surgeon is fairly happy with the way things are going.  He told me 2 weeks ago ...

hi. i have had my ileostomy for 2 years now. I was single before my operation and have 2 lovely girls. I would like to meet some special, male. I have tried dating and obviously have had to tell potential new boyfriends. I found that very hard as I cant really come to terms with it. They have been reassuring that it makes no difference. Why do I feel after telling them I am not good enough, begin to feel paranoid that they dont really like and iv put them off. I cant shake the feeling and end up calling it a day. Anyone got any dati...

I had Crohn's and got an ileostomy in 2009. I am a 65 year old man who has been married since 1972. I have read similar stories as mine on this site. My wife is my ostomy nurse (she helps me shave and change my bag). I don't know what I would do without her. But, that is where the love stops. Since the surgery we have become nothing more than roommates. The sex and romance are gone. It wasn't great for the ten years of battling Chron's prior to my surgery either. She simply has no interest and will not talk about it. She hasn't looked me i...

Hi Everyone I have a temporary ileostomy due to crohn's. The plan was to see if my colon would heal or not. So last month i had a MRI of my small instestine and a colonoscopy of my colon.  When i had my colonoscopy i've already been told that 60% would have to be removed, but 40% would be enough to have it reversed. The thing is the 40% that will stay bleeds easily. I went to see my own doc yesterday to get my remicade iv and i told him about this. he said that probably wouldnt be an issue that the bleeding was because of diversion...

My doctor, a colorectal surgeon, has recommended a temporary ileostomy for puborectalis contraction and constipation that have resisted other treatment for years. I'm trying to seek out ALL the information I can beforehand. I want to be prepared particularly for the smaller details I should expect. I want as much of the stress and shock as possible over with while I'm not sick either from a colon prep or surgical recovery. I'm sure I'll think of more, but right now I've got three top concerns. First is the burning caused by digestive enz...

Short version: I am a FAP patient and I will have my colon and rectum removed. My doctors want me to go for the J pouch but because I could develop polyps in there and also because of all the possible complications/issues (explained below) that could come with the pouch I am thinking about going with an end ileostomy which for some might sound stupid but the less surgery the better for me and it seems to grant a more stable life "outcome" then the J pouch which could fail before I die, giving me more trouble at a later age or even be...

Hi everyone,         & nbsp;first time posting, I have an ileostomy since xmas eve 2009. (emergancy surgery). I am 55 year old female and live in Australia. I have gained 30kgs since then. Cant seem to loose any weight, getting a bit depressed about it. Just wondering if anybody else has had the same problem. If you can help me please let me know.          ;      cheers buterfly

Once again I am turning to you all for advice.  My surgeon had told me that once in a while I might find that I pass mucus from my rectum even a small amount of stool.  He did remove about 1/3 of my rectum but said I still have enough of a functioning rectum that this could occur.  Well, in 3 weeks since my surgery I have now passed stool 5 times.  This seems crazy to me.  It's always a small amount but still I really don't get how it's happening at all.  Has anyone had this exper...

I have had an ileostomy for 18 years.  I was diagnosed with UC and was incredibly ill for years hence the bag...  I was told I could consider the j pouch op but after years of ill health and then feeling great finally I decided to forgo more surgery and just live with the bag.   Then last week, I spoke to a specislist about a reversal.  He told me he could join me up without the jpouch and reckons it should all be ok.  I have booked it in for 10 December.  Now I am soooo nervous and really hope I am doing the...

I am trying to find some sort of diet regimen that will result in weight loss that will work in harmony with my food limitations with my ileostomy. Most standard weight loss diets require a lot of fresh fruits and vegetables. I have discovered (over the past 30 years when I had my ostomy surgery) that I am extremely limited in what I can eat in the fruits and vegetables department. Too much roughage causes blockages at the ileostomy site and results in leakage from around the wafer. Please help!

Hi ladies, This may be a silly question but I will ask it anyway.  I have a important event coming up next month.  I am round around my belly.  I know a lot of women out there wear spanx to help with fat.  My question is has anyone heard of a product that does the same thing but you can use it with a bag?  Any advise would be appreciated.  Thanks, Pamer

I am new to OstoMate and just a bit shy about asking questions. But from what I have read, I know I shouldn't be concerned about asking any question, so here it is: Soon after my ileostomy surgery in 2013, I was informed that about every six months a discharge of "mucus" would occur. This happened.  About a year later this discharge became more  frequent, where I experienced the discharge once per month. Then the discharge happened once per week until it began happening almost every day. Frequently there is blood in the discharg...

I'm hoping someone can help me...I've had Crohn's for many years and had an ileostomy done more than 10 years ago. I've recently had a complete proctocolectomy and my husband and I are wanting to start a family. Anyone out there been pregnant? I've heard that fertility decreases due to the crohn's and surgery? What can I expect during pregnancy? Will I be able to care for my stoma myself?Is there any special needs for extra nutrients/diet during pregnancy?

I am curious, do others with ileostomies catch colds or stomach bugs easier after you lost your colons? Do you fatigue easier? I ask because it seems that ever since I lost my colon, I get sick much more often.

Hello! This is my first post on this site. One of the things I was curious about, and am hoping people have real experience and tips for, is how to manage with an ileostomy and traveling, specificaly in New York City? I fear this ileostomy will be permanent for me, and am struggling with a lot of the things this means for me as a young adult woman. As I am figuring things out and trying to stay positive, one of the things I am at a loss for especially is the practical side of it: if you have been to NYC, and know about it, then you know h...

I am 1 year post-op after my ileostomy surgery I had performed at the Mayo Clinic. I still have daily pain from the hernia involved - most days are manageable but some days are very painful. After my surgery, the Mayo Clinic told me I cannot take Vicodin for pain management because it will cause a blockage. I had a particularly painful weekend so I saw my local GP doctor this week and brought up this issue. He sees no reason I cannot take Vicodin - the only side effect might be a "slowing down" of the stool (which wouldn't be a bad thing )...

Hello all! For some reason, I seem to have lost the ability to send private messages on here, so I thought I'd just put my news here. I'm to have an ileostomy on 4th December! Not much fun but I'm looking forward to spending much less time in the bathroom when it's all settled down! Got my pre-op appointment on Saturday afternoon, and a meeting with the Stoma Nurse next Tuesday. I've got loads of questions whirling around my head & writing them down as they come to me! Any advice as to questions I should ask will be very welcome! One t...

Hi There, Just thought I'd introduce myself and ask a couple of questions. I've been reading the forum and I have found it SO helpful and SO uplifting. Thank you for your kindness and openness.  And now I will reveal what a spaz I am ;) I am a 40 year old female, generally healthy but last year got a horrible attack of acute diverticulitis (7 hospital stays, an abscess, a perforation, etc). I had seven inches of my colon removed on 11/30/17 and though surgery was supposed to be laproscopic and not require a stoma, I woke up with an...

I'm going blind (and not finding what I know much be out there) looking at the websites -- so maybe someone can lead me in the right direction. I'm interested in getting a support belt. Not one of the narrow ones that attaches to the pouch and just holds it down better against your body. Something wider (hopefully not too cumbersome) that goes around the body, supports the abdominal area, and accommodates a vertical ileostomy appliance. I'm fairly active but have never had great abdominal muscles and was told and retold about being c...

I know this may sound weird but...is water heavier then ice tea? For some reason, I can drink all the tea & soda I want but when I drink even a little bit of water, it comes out IMMEDIATELY and with force, usually causing a leak. I don't drink alot. I have a cup of hot tea in the morning, then a glass of iced tea with lunch, then 2 glasses of ice tea with dinner, then maybe a glass of gingerale a few hrs after dinner. I will take a sip of water with my meds but that's it. I would LOVE to be able to down a bottle of water. I am urina...

Is it ok to clean out my bag by putting warm water in it while it’s still attached?

Does anyone have problems with making the underneath part of this bag (the part that attaches to the skin) last 3 days like they're supposed to? I do! The stoma nurses/doctors say that seeing a white line around where the bag is fitted after a day is normal, but I think It's a constant worry, because after just hours of having a fresh one on, it feels as though it's going to crinkle or tear. So I check it out and ruin the seal to make sure it fits well enough to last 3 days. I have recently changed the type of bag I'm using (just yeste...

Ileostomy due to rectal cancer surgery here - just 4 weeks in.  Still getting used to stuff. Some days it's like peanut butter, but for the past 2 days it's been complete liquid.  I know this is based on what I eat, but I had lots of pasta yesterday so I'm worried about the output. MAJOR MAJOR gas too!  I'm going to try the marshmellow and BEANO advice you've all given here. Is it always going to be inconsistent textures like this?

I am scheduled for a colonoscopy on Thursday and pretty confused.  I still have my colon, but due to abscesses on my colon and a fistula, I was given a (temporary?) ileostomy. Trying to get a correct diagnosis.  My question is: why do I need to do this movie prep and fleet enema when my colon should be empty from all the testing they did in my two week stay at hospital. Also, can anyone advise me on what I can eat that won't go right through me so fast. I eat bananas, breads, pasta, pectin jelly beans, crackers, peanu...

Hi all, Fairly new to this site, not too sure if I am in the right place, just wanted to know if there Is any info or what is every one's take on salads, that seems to be the one thing I miss Not eating, has any one here ate them and if you had any problem like with the lettuce. Thanks for any input.

I had a LAR with ileostomy in Dec 2018. After the post-surgery chemo, my doctor is pushing a reversal. Prior to the LAR I had radio/chemo. It was successful as the pathology report showed that cancer has been downgraded from stage 3b to stage 0. I had 27cm (10.6") removed which included all my rectum and probably most if not all the sigmoid. I also had some burning / scarring in the 'back passage' due to the earlier radio. I've read horror stories from those who have had a reversal and regret it. I don't love my ileo, but I also don't hate...

Hi everyone! Im new here.  A quick recap of my life.  About 22 years ago, i was diagnosed with UC.  I was treated with meds for 3 years but it was quite aggressive, so i had my colon removed and j-pouch surgery in 2000.  All went well (temp ileostomy for 3 months, takedown surgery, then, well, life went back to normal...or new normal). Then Thanksgiving 2018 i started feeling bad.  I thought it was pouchitis.  And it was.  But after a round of flagyl and cipro, i wasnt better.  For 2 months, i went b...

Greetings! I'm asking this question on behalf of my husband who has been an ileostomate for 10 months now. While he's adjusted admirably, there is one issue that is ongoing and causing him quite a bit of stress. It seems that everytime he removes a bag in order to replace it, his stoma will expand. We aren't sure if it's the air hitting it, or if it's because he does it immediately after taking a hot shower. The problem is that once the stoma has expanded, he must cut a hole in his replacement bag that is big enough to accomodate it, but...

Has anyone had an ileo then gotten a j-pouch made and been reversed? I have a preop visit with the surgeon in a few weeks and am pretty nervous about the coming surgery. I want to know what I am in for. I'm not thrilled about having an ileo but in some ways its not so bad

Hello all I have had my little friend since December 2011. I did think it was hard enough finding a fella as a single mum but this makes things that much more harder. I met a guy on a dating site so have had the chance to get to no him and him me before meeting. Well the time has come to bite the bullet and will be going on a date tomorrow night. The only thing im worried about is telling him about my stoma and have said from the start that I would tell who ever I go out with about it just after the 1st date. Not sure if that's the right...

I have had my ileostomy since 1991 when I was 19. I am now 42 and have started having open wounds develop on the skin immediately surrounding the stoma starting about a year ago. I have never had this occur in all these years. These wounds are not being caused by any excoriation issues, changes in skin care products, my hygiene routine, etc or anything else I can possibly think of. I am a registered nurse and have very good hygiene and take exellent care of my stoma and use well-fitting appliances. I do know how to properly care for the wo...

In 2008 at the age of 20 I inherited a neurological disorder that caused 15 daily BMs and a constant fecal smell. Other than nerve problems of the internal sphincter, my health & fitness were excellent.In July 2013 I got an elective sigmoid colostomy. I still smell like feces and have been severely bloated since surgery. I'm very lean and barely eating but have a huge stomach most of the time. Its extremely uncomfortable, to the point where I can barely sleep at night. I irrigate twice a day just to get some relief from the pressure. A...

I've been having problems with my ileostomy for well over a year and been in and out of A&E with severe abdominal pain several times. The A&E doctors only seem concerned that the stoma still has output. It stops working while I'm having the episodes of pain but there is always eventually some output. Once output resumes I'm treated as a pain management case and turfed out home again. I'm taking Oramorph when in pain, Ondansetron for the constant nausea and Lyrica twice a day. Bloods are normal and I've had a standard abdominal x-r...

Would like to chat with anyone who has had a continent ileostomy.< >

I have been recently told that seatbelts and ileostomys do not mix.  In a serious accident you would bleed out so fast that it would be all over quickly--  This was from a very reputable medical person.   I know I find the belt most uncomfortable as I have an ileostomy and do the driving thus the hook is on my right side.   I was told that cushions or a small pillow will not help in an accident bad enough that the airbag deploys.   Does anyone have any info on this???    Thank you--    

I had surgery 2 weeks ago. Besides just feeling numb, I can't shake this overwhelming feeling of fatigue. Will it get better? I would have posted this in forums but don't know how? I click on forums but nothing comes up to post on. < >

I recently had to have an emergency right hemocolectomy which resulted in an Ileostomy. This was due to my bowl twisting and completely rotating. The result of this was a lot of my colon died and was removed. I am greatful to be alive as it was a close call but have found the suddenness of it all quite hard quite to adapt to. On top of this I have a long standing eating a ( anorexia and occasionally bulimia ). I am finding juggling the two quite tough -especially the nutritional side of it as my diet had had to completely change . I also ...

Does anyone with an ileostomy have shortness of breath and if you do, do you know the cause and solution  Also no energy. Thanks

Hi Guys ........ It looks like I will need to make a decision before long as to whether to have an ileostomy or a colostomy which I will have to have for the rest of my life .....(currently have an ileo...)  I am fortunate enough NOT to actually have any 'bowel problems' per se as do many of you, but wondered if anyone out there had any experience of having both? What are the pros and cons, which is the easiest to manage etc etc....  Also whether or not to have my rectum removed? How does that feel? Would be grateful f...

Hi all, What are others experiences of flying in the UK with an ileostomy? The specialist assures me it is safe to fly, but why do I get the feeling you have to have been there to really know what it's like? I'm due to fly next month (internal flight) but am a bit concerned about security checks - presumably my device will show up on the bodyscanner - am I then asked to step into a door for further examination? I have a card from Charter Healthcare explaining that I wear a device and that it must only be examined in the presence of...

Hello everyone. I have recently been told that my bowel resection/reversal is likely to be in September this year which is earlier than I thought. Great news but less time to lose weight before surgery. surgeon says it will make things easier - want to lose weight gained recently in any event. In the past prior to ileostomy and gastro problems had a lot of success with Slimming World which essentially for those who don't know focuses on excluding fat, sugar and refined carbs eg white bread. Not necessarily low carb as can have rice, nood...

Hi, i had a stroke in august of 2011 and soon after they found a tumor in my large colon, upon having it removed i was left with an illestomy and annoyingly very little support after the first time i needed to change my pouch (so all my "knowledge" is self taught from trial and error and blogs online and such, so appologies if i use a wrong term). I was due to have my reversal in may but i was also awaiting a heart operation and that had to take priority at the time, now im recovered and seeing my stoma surgeon in july and hopef...

Hi everyone!! I have been cleared for surgery and have scheduled it for early this upcoming December. I am having a total colectomy with the formation of an ileostomy. After 13.5 years of Crohn's/Ulcerative Colitis (Drs still can't figure out which one it is), I am ready for this surgery. I was wondering for those of you who have had the surgery... 1) What is something you wish you had known before going into the surgery? 2) Did you have a lot of trouble with leakage? I'm a little nervous about this. 3) I've heard about rectal discharge...

I know that cooked spinach is a bad idea with ileostomy, I was wondering if anyone had tried spinach dip? There is some in the fridge and it is looking very good.

Hi I just had the ileostomy but im finding it leaking. Is this normal ?

I have never suffered from back pain until now.  I am now 4 weeks post op and find the littlest amount of walking and/or standing causes me terrible back pain. Even when I'm sitting down I must prop pillows behind my back to avoid the pain and discomfort. I'm wondering if anyone else had this problem post-op.  I'm hoping this is maybe because I had a large incision cut down my belly.  Any input is appreciated.  I

Hello my Ileostomy bag keeps filling up with water been doctors they gave me dirolyte and immoduim but nothing working. Can someone help me please ?

Hi there,  the last few days I have had this horrible feeling the way that I felt pre surgery when I had constipation. I have been taking tramadol due to abdominal pain and Im wondering if this could have caused constipation. Is it possible to have constipation with an ileostomy?   Thanks, Hannah

I just have been diagnosed with recurrant bowel cancer, my question is has anyone got a ileostomy and a urostomy. this might be a question that will have to answer to if i get the option after my pet scan results. I would like to make an informed choice on this matter. If i'm lucky enough to get this option. As it is ,i will be getting my whole pelvis cleared. Will it be worth it? Can anyone help me?   PLease  suzy x

Hello,   I have always been very active all my life, no IBD, but...I broke my butt...yep, that can really happen and need advice from real experts. Lifting weights, age and years of spinal damage from doing the same culminated in nerve damage after an exterme lifting session that left my rectum paralized. I have gone from exercising every day for the last 40 years (since I was 16), socially acive and productive at work to dropping 30 lbs, stop exercising, much less productive and a hermit shut-in. I cannot have a bowel movemwnt. I...

Yesterday afternoon, shortly after lunch, I was surprised by a sudden blockage. I was so busy that I didn't even realize that I had no output ALL day. It was 3:00 pm. Cramping, nausea, pain, and belly distension had me paralyzed in pain. This was my first obstruction that was not post operative adhesion related so I was shocked but not scared. I massaged the area. Drank hot tea. Prayed. Cried. Moaned. Then crawled to the phone, went to the pantry, grabbed a big syringe that is really used for cake decorating, a plastic cup, and crawled...

Here's my question does any one have the first two condition's and do they use Metamucil?  I was just wondering if I should start using the Metamucil again, would it help with the diarrhea and or what other benefits that I might get from using it. Thanks a bunch Terr

I have had Norman for 2 1/2 years now and appart from the occasional urge to pass mucus which I was pre-warned about, have this week been for a pooh twice!!! It is real pooh, the same colour as it used to be, and I am quite concerned. My stoma is working but at the same time this has happened?? I have had stomach aches a bit like the old monthly pains and my back has been hurting but why is this happening. I thought that when I had the ileostomy the tube was cut and one end was formed to make the stoma and the other end is sewn in undern...

So, I posted once before about the constant back pain I now have since surgery. Well, at my second follow-up I brought it up to my doctor who "assured" me that he's never heard of such a thing.  Am I just crazy or aren't there plenty of you out there who now suffer with back pain.  I should mention I have an ileostomy.  Needless to say, Christmas shopping has been just about impossible because of the back pain.

Would like to know what exercises are good for a iliostomy person like me.  I am 61 and fairly active and love to hike.  I would like to trim down everywhere and around my belly area.  Any suggestions.  I did join a fitness center.

Hi all. My mother was recently in a head on car accident (oct 03 '14) in Spain - visiting from the UK for a friends birthday - and it resulted in her having some of small bowel removed under emergency conditions due to heamoraging, I am here to find some advice for her. She now has an ileostomy from this surgery (05 oct). After about a week in ICU she is now in a *normal* room with her husband staying there. She has been told she can have a reversal with in the next week, this seems VERY soon to me, she broke her right arm in the acciden...

Greetings to All.... I am jotting down and seeking help on behalf of my beloved Aunty.     My Aunt is 52 yrs old who has undergone major surgery due to ovarian cancer in the year Aug 2013 and was under chemotherapy.Due to obstruction, On Feb 26th 2015, she underwent ileostomy surgery where she got her stoma. After the surgery, Again she was on chemo but that didn't help much so the chemo medication was stopped.For two three months her recovery was smooth and her stoma was functioning well. Suddenly in the month of June 201...

I had an ileostomy Feb. 2nd colonic inertia and pelvic floor issues. Before the surgery, I was probably a little over-the-edge with saunas because I couldn't stand the thought of what was happening with all the toxins since I was only able to go to the bathroom every couple weeks or so. Now, I'm noticing a bit of a muffin-top starting and want to nip it in the bud. I would like to do my workout and finish with a sauna. One of the ostomy/wound nurses told me to be careful with hot water or the heating pad because I could scald the stoma. I ...

Been lurking for a month and want to give Kudos to all for sharing their knowledge and experience. Back in the first week of May I had bleeding diverticulosis and after the first surgery there was a leak that caused (for the life of me I can't think of the word) an infection which required a second operation to drain the area that resulted in the Ileostomy. So last week I met with the surgeon that will be performing the reversal and I'll be meeting with him the beginning of September to schedule the procedure. But after reading all the ...

Hi, I have an extremely large, heavy & painful stoma hernia (2nd one in 2 yrs).  My GP contacted surgeon staying he advises urgent surgery. Surgeon says (without seeing me) I've to wait 12+ mths.  I almost have to "carry" my hernia around, suffer excruciating pain and constant leaks. I'm virtually housebound and desparate.  Can anyone advise me how to seek help/who to appeal to please? Thanks

Can a person with an Ileostomy still scuba dive or snorkel??  I know swimming is ok.

Im getting a colostomy reversal and incisional hernia repair and diverting ileostomy . Anyone been thru that,whats it like. What am I in for?

I’ve only had this for 1 month, how can I make it easier to empty , sometimes it’s so thick!    

I see alot of people talking about a colostomy and irrigation and being able to go without a bag for a while.  I am somewhat confused between the two.  Is an ileostomy when you lose all or most of your colon and a colostomy  when you still have part of your colon working??  When you have an ileostomy, you can't go without a bag or wear a plug but do people have control when they have a colostomy???  What exactly is irrigation and can it be done with ileostomies??  I've done some reading but it isn't totally cl...

I am having my first colonoscopy this week and I have an ileostomy.  I dont understand why they have mailed me the golightly and pills to take after I heard that someone with an Ileo should never take laxatives. Isn't it dangerous to drink a gallon of that vile demon liquid?

Hi all.  Looking for feedback from anyone who has had a reversal or is being considered for one.  I am 3-1/2 months post ileostomy and my surgeon has said I am a candidate for a reversal.  He wants to scope me next month to make sure everything "looks good and healed" and if it does he plans to do a reversal in March which will put me at 5 months post ileostomy.  Originally he told me six months minimum so this caught me off guard.  I'm nervous because I don't want to rush into so...

I am 9 days after surgery. Nothing could have prepared me for this. The pain, not feeling well, the constant trips to bathroom. Its hard work. I have had leaks and dont know why. Not being able to do much for myself. They kept telling me in the hospital "your doing great, your doing great". When I got home totally did not feel like Im doing great. My ostomy nurse ordered me supplies and now I have so much stuff I dont know what is what. I am extremely overwhelmed and feel so alone.

Hello, I am 9 weeks post op from getting an ileostomy and everyone says to slowly increase your diet. I tolerate carbs. with no problem, but I also do not to gain too many pounds. Any suggestions on proteins, receipes? Thanks, looking forward to hearing back. One "mate" to another

I just had a Ileostmy due to a failed jpouch. I'm 2 weeks out. Sorry, I have no patience but I'm just so tired. Beyond tired, I just want to get back to life again. How long is a recovery? And what can I do to speed things up? 

Anyone that has an iliostomy have or are on Lomotil would like some feed back my dr put me on it today due to output is so frequent and having to empty my bag all the time, Thankyou.

My ileostomy output is sometimes thick, sometimes thin and sometimes like water. I'm used to that, and I know that foods can affect the consistency. But I also have noticed that sometimes the output seems what I might call "blended"--a smooth consistency--but a lot of times it just seems like chunks of various sized pieces in a watery base. Is that typical? Has anybody else experienced this?

Hey guys. I have had my little friend (I call him sammy) for 8 years and was out on a very strict moderate fiber diet. 8 yrs later I'm still trying to figure out what I can and cannot eat. For example...i love honey roasted cashews...can I still eat a bit at a time? What about sourkrout? I have found that, with moderation, I can eat a lot of things on the "no no list."   if any of you can let me know some of the foods on an diet for someone with an ilieostomy as well as what to avoid that would be great and I welcome different r...

I got my ileostomy in 2016, and have been absolutely miserable since. It has nothing to do with "Ruby", it works fine, no weeping or sores; it's me! I feel like a misfit with this pouch in me. First of all, I'm only 4'8" tall, so the average 11 inch pouch lands on my thigh. If I roll it up and tuck it into my panties the velcro closure cuts into my groin (plastic clips are worse). I can't use a shorter bag/midi because my output is too heavy. Plus I feel extremely self conscious and Ruby tends to be rather rambunctious with noise. Am I the...

Hi Everybody I am new to this page and I have some questions regarding the weight gain/loss after an ileostomy surgery. I have crohn's since 2009 and my first ileostomy surgery will be within 3 months. The idea is that it will be for 6 months but i have been warned that it might be permanent. Never had an issue with flare ups that i lost alot of weight. Maybe 1 or 2 kg at most. I I do have problems with maintaining my weight, especially after the long term prednisone i had 3 years ago. Gained 10kg and only lost 2kg of those. Permanentl...

I have had a permanent Ileostomy for 18 years and have very loose bowel movements..I empty often throughout the day and night and have always dreaded the putrid smell from contents which would literally stink up my bathroom for hours regardless of how many times I would flush toilet or use air fresheners.. a couple of months ago I Googled anything that may help and found a Hollister product called M9 odor eliminator drops which destroys odors in ostomy pouches and WOW!! this is amazing stuff I put 8 drops inside pouch ater each empty and h...

Is it 3, I guess so as it is 2am. My ileostomy is gurgling embarasingly loud but I'm alone so only I hear it. My surgery went well but longer than expected...the 3 hour time slot ended up up being 7 hours. They scraped part of my rectum and it's lymph nodes. And then obviously removed my whole colon. What's weird is in FAP you get clusters of polyps. I had just little polyps all around. And my A PC gene has a defect (a PC gene leads to FAP) but the defect isn't where the FAP part is so I am a medical mystery. Ugh I am still gurgling here....

hi again, so I finally had my ileostomy surgery on July 26, well after a few days the Drs couldn’t understand why I wasn’t having any output, so on August 7 I went back in and had to have an obstruction taken care of as well as 3 ft to small intestine removed and a totally new ileostomy put in. After the surgery I went 6 hours screaming in pain bc my blood pressure was so low they couldn’t give me any pain meds.  I was in the hospital for a month, went home for a week and back in for another week, went home for a day...

Is it  normal to have a bowel movement out your rectum? Has any one experience this with a ileostomy? My grandmother has had a the ileostomy for at least 3 years.

Hello,?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" ; /o:p/o:p o:p /o:p My mom has an Ileostomy since October this year. She have many feces fluids with any bowel movement which cause leakage, any diet tips to reduce those fluids?o:p/o:p o:p /o:p Thanks,o:p/o:p

Hi Iam new here, had my ileostomy a yr ago, I'd like to know what we can really eat, does anyone have a good diet to follow. I love salads but afraid to try them, was wondering if anyone has, and how it worked out. thanks

Hello    I'm considering having my gall bladder removed, and would welcome any information from ostomates who have had this operation. I have an ileostomy (no large colon at all) and am interested to hear others' experiences of how the constant flow of bile affects digestion and output etc. If anyone has any tips on how to avoid gall bladder removal, that would be brilliant too! Thanks, Linda

Have a temporary Ileostomy which is scheduled to be reversed in January. I've had a bunch of problems with leakage, ended up going with a Hollister wafer for low profile stomas along with high tension on the ostomy belt and that really seemed to help. After that I started having issues with leakage between the wafer and the bag. Started using superglue to hold them together and it worked with minimal results then tried ostomy paste and so far no leaks. Still having some leakage issues. At night often times I'll wake up and the bag will ...

Hello everyone, I've not been on here for such a long time. Last time I was on here my boyfriend was facing the prospect of stoma surgery back in the summer, and now here we are, 5 months later, with a very special little friend we've affectionately named "Rocky". Having Rocky in our lives has changed everything. Mostly, I'm pleased to say, for the better. My boyfriend has adapted to life with an ileostomy amazingly well, with very few down days (which are only to be expected from time to time). I just can't believe how differ...

I am new to this forum.  I had an ileostomy for one year and just had it reversed in August of 2014.  I am having a difficult time and would like to meet individuals and have them share their experiences with me.  I am seriously considering going back to the bag as I definitely feel that my quality of life was better.  I should have done more research on my own.  However, my surgeon explained as if it was a simple:  five to six BMs a day controlled with imodium and lomotil.  I have learned that it entails...

Has anyone had a stoma prolapse and had to have their ileostomy moved to the other side of their abdomen along with an abdominal hernia?

It has been almost a year after my second surgery and I have started to pass odd mucas material through my anus.  This is like thick putty, slightly pinkish.  It makes me feel like I need to move my bowels but my large intestine was removed because it died in less than 24 hours.  I have never had this before.  It has a very bad odor but it is not hard material, rather more soft. Since this started yesterday, I have felt somewhat odd.  I have had some nausea, felt weak and this material irritates the area around my ...

Help! I've had an loop ileostomy for 4 months (colostomy for 10 months prior to this). I still have a small amount of faecal matter passing through my large bowel and due to the Imodium to slow my bowels done, I am now really constipated. I've tried Fleet Enemas, Microlax, Fleet Mineral Oil, Cooking Oil and water but nothing is shifting it and I'm in a lot of pain. Does anyone have any suggestions?

  I have three outlets in my stoma. One is an iliostomy that is VERY liqued unless I take immodium or something to slow down my gut.  The second is what they call a mucous colostomy that for the most part just has clear mucous but from time to time has stool.  The third is a tiny colostomy outlet that backs up and has resulted in three or four ilius situations.  The stool that comes from there is large, very firm and dry. Most of the back ups seem to come after I've had a surgery or some procedure ...

Hi, I'm a registered nurse that has just started working on  a general surgery unit. I don't have that much experience with changing ileostomy appliances. I had one patient the other night who's ileo appliance is always leaking. Sometimes her appliance is changed 1-3 times in a 24 hour periord. We use eaken to fill in any skin depression in order to increase the seal... The problem is that everytime we change her appliance I run into a lot of problem when trying to clean peristomal skin and removing the previous eaken. It stick...

Hi,  I am heading to Cuba in 2 weeks and wondering if anyone travelling has had any problems with bringing supplies and having to explain your supplies.....Anybody with any advice or travel tips...... Thank you

Does anyone experience low body temperature especially cold hands and feet with having a illeostomy. I am wondering if not having a colon  could cause this ?

Hi everyone! I am new to this kinda thing! So i had my operation last August due to severe ulcerative colitis. I was wasn't suffering very long and the fact i had a major operation very quickly was a bit of a shock! I had to have a sub total colectomy and an ileostomy. So far everything is going ok luckily enough! I have a choice of getting the ileostomy reversed later this year. The surgeon did mention to me that it was a more difficult operation & there are complications that can happen. Plus the fact i haven't got much of a colon ...

Hello all! I need some advice. I have had my ileostomy since 10/11 & we are just now getting into the heat here in the South. I was at my daughter's softball tournament yesterday & it was about 90 degrees here in Georgia. I drank ALOT of water & Gatorade yesterday & also ate fruit, but was really dehydrated & zapped from the sun yesterday. I am afraid that I have seem a glimpse of things to come for the summer & I want to know if any of yall have any magic potions or tips for staying hydrated while outside for the d...

Hi I am an almost 23 yr old female who just had to have her colon removed for having severe C.Diff for over 3 1/2 years and it was causing major problems causing my kidney function to go down to low 70's and exreme water retention around 15 lb's. I was wondering from other people who have had there colons removed how much weight they have lost in the 3 weeks after surgery. Different doctors have given me way different numbers but I just wanted to know from some people who actually had the surgery. Thanks Elena

I have ostomy on my left lower abdomen. For the last year I have been experiencing a burning sensation from left hip bone to left edge of ostomy. No pain but the burning at times is very uncomfortable. I have a nice size raised area underneath the sticky portion of my wafer hence making the wafer on the left side pull away from my skin and having to change it. I seem to be changing it every day where as before the 'hernia', I would change every 5-7 or 10 days. I have a GI appointment at Walter Reed/Bethesda Aug 28th. I don't know if the do...

Me again.  I keep writing because I find myself so lost in this whole thing.  Question for anyone out there that has undergone ileostomy reversal.  I've been told if all goes well and I heal well I should be able to undergo ileostomy reversal in 6 months but before that I will have to successfully complete a defecating proctogram.  Because my rectal muscles don't work real well I did not do well taking this test prior to surgery.  I'm wondering if anyone else had to take this test and/or ho...

Hi all.  Been a while since I've posted.  On March 4th I finally went in for my reversal.  Since that time I've been incredibly sick.  I've lost 10 lbs.  My nausea has been the worst ever and I've got constant abdominal pain (not surgical pain but gut pain).  To top it off, unlike most who undergo a reversal and suffer with diarrhea, I am incredibly constipated and unable to go.  I was just hospitalized again for extreme dehydration and vomiting.  I have no des...

Hi! I am 28 years young. I am schedule for a total proctocolectomy with ileostomy in a few weeks. I have had enough of dealing with ulcerative colitis and i have decided it is time for a stoma. Obviously, i have a lot of questions of what to expect. One main question that constantly pops in my head constantly is, will my quality of life really improve? UC v.s ileostomy?

Hi all! I am a 48 yo male and am one week post ileostomy takedown. I had a temp ileostomy for 5 months due to a bowel resection for diverticulitis. I read many horror stories online in my quest for information and i have to say I couldn't be happier with the way things have turned out.I had my surgery on Feb 19 at 8:30 am and by midnight I could feel my bowels starting up. The sounds were incredible as the old boy kicked into gear with minimal discomfort. Soon after this I passed gas for the first time in 5 months and it felt great! At 3:3...

Hi There! First of all, thank you for taking your time out and reading my post. I had an emergency operation of tuberculer intestinal obstruction and 3 feet of my small intestine was resected and ileostomy was created. One night I felt something weird (like a shock) near my stoma something like my intestine is pulling inside and whenever this happens gas came out, discussed with many doctors all respond as normal and I was convinced as my intestine was stiched in my abdomen so when my intestine moves I felt in my abdomen.  But after h...

Dear All, I have a partial gastretomy and an ileostomy for almost a year now. I live in the UK. Recently I have started to throw up a lot. I don't know what best to eat or drink. I wonder does anyone have a similar experience and if so could offer some advice? Thank you very much in advance for your help. 

I'm having debulking surgery for ovarian cancer in a few weeks and need to prepare for a very likely ileostomy. I don't think the one-time visit with a stoma nurse pre-op is going to cut it. I want to be prepared before I go under the knife so I know what kind of food and supplies and incidentals to have on hand when I return from the hospital. From what I gather, I'll get some "lessons" in the hospital and by the handful of visits by the visiting nurse, but I think I'm not confident this will be enough. Thanks in advance.

Hello everyone,  I am asking a question about the skin around my ileostomy.   It is quite red and sore.  It looks like it is irritated where the stiches are starting to disolve but it is really burning.  My first stoma used to be about 1 1/4th inches but the stoma nurse told me this one is a little larger, about 1 1/2 inches.  I am not sure if I should be cutting the skin barrier a little smaller or not.  If I put the wax ring over the sore skin it will really cause a problem when I remove it for changing. &nb...

I've heard a colostomy output is a less watery, but that's about it. Anyone knowledgeable on this?

Hi everyone, I didn't think I would have so many problems before and after my ileostomy surgery. Question(s) I have today is what would anyone recommend me eating after ileostomy surgery, they told me liquids at first then move to solids and so on. I am having trouble keeping anything down since I believe they gave me to many medications that make me very loopy and not me at all. These medications have made me sick and not wanting to eat and throw up the majority of the time. What do u all sujest I can eat or drink for now. I don't really ...

Hi I am 8 weeks post surgery for Panproctocolectomy with permanent ileostomy and just wondering if anyone can tell me when I could start back at the gym ? I am currently walking a lot each day and feeling fine. I was hoping to start cycling/cross trainer/swimming with maybe some light weights. The last thing I want to do is cause any damage and end up back in hospital so would appreciate any advice. Thanks      

Has anyone had a problem with Medication not having time to disolve with a iliostomy? It seems a good part of my med's do not have time to disolve. The pill is still whole when it comes out. There isn't a liquid to replace the pills, I have asked. I have also tried waiting 2 hrs after I eat, that helps some bit it still happens sometime. When I try to time it, I often forget to take it. (I think they took my memory along wit my colon   ) Thanks for any suggestion. JC

Hi anyone - Following a question I asked in another thread and based on Does reply - is it possible that I may have crohns or UC orsomething and we can't tell because I have an ileostomy - how would itpresent itself in that case, any ideas? Currently experiencing bad gastric reflux/horrid taste in mouth bloating nausea fatigue muscle aches/tics/generalised pain all over sleep disorder - apnoea and drowsiness during day bad skin - esp hands, very dry and cracked despite constant moisturising blurred vision frequent dizzinessThe above has ...

hi I have an illeostomy have had it for 4 months any tips would be a great help

what is the difference between an ostomy and an iliostomy--I feel so stupid for asking. I am four months post op. I had my colon removed and I am new on your link.

Hi: I am a 53 year old woman who has had an ileostomy since January 1996 due to ulcerative colitis.  I haven't had too many problems over the years expect for a few blockages due to bad food and taking codeine for a toothache pain.  But last month (October 2010) I was diagnosed with breast cancer.  Thus I have 2 questions: (1)  I am worried about the side-effects of the upcoming chemo, meds and radiation treatments.  Has anyone else with an ileostomy had breast cancer, and/or can anyone rec...

Hello all.  I am new to this and would like to introduce myself and my concerns.  I am the fiancee of a 46 yo man with a permanent ileostomy.  He was diagnosised with colorectal cancer last Feb.  He underwent chemo and radiation to shrink the rectal tumor, but it was not affective and the cancer spread everywhere.  He had extensive peritoneal carcenomas.  He underwent emergent surgery in June 2010 for debulking and removal of the cancer.  After a 14 hour surgery they end...

Hi I am a new member and looking to see if anyone else has experienced some of the issues I currently have. I had an Ileostomy surgery in July due to ongoing bowel issues for 3 years with no response to treatment and causing severe weight loss. Since having the procedure I now suffer the same symptoms with high output stoma which Imodium is not currently being responsive. I also have high digestive transit so any food I eat does not digest properly therefore causing absorption issues. My consultant also thinks on top of this I have bacte...

Can it be reversed? Ive searched and searched for any info on it and i'm coming up with nothing.  I'm OK with living with the bag I just didn't know if maybe sometime down the road i wanted to reverse it, I could? Anyone know anything about that?

Hi everyone, serious newbie here. I am due to have an ileostomy in a few months time. I have had a stoma for about 15 yrs due to having an ACE button. But having an ileostomy bag is scaring me to death, although I know it's going to make my life easier and hopefully I will be able to start going out and about again and not be tied to a loo for hours on end! I was just hoping if anyone can tell me the sort of things to expect after the op..whilst still in hosp. And also how long it took people to get the hang of dealing with "Fred&q...

How often will I have to empty my ileostomy per day? I know it's different for everyone, but hoping to get a general idea. Also, will I have to set my alarm at night to get up and empty it several times a night? I have surgery March 21, 2014 to get an ileostomy. I am not thrilled. :-/

Just got my ileostomy yesterday. And oh my stars! It is noisy! I hate it! When air passes through it, it literally startles me because it's so loud! And it's so embarrassing! I don't see myself going out in public with this noisy thing... EVER! Does anyone have any tips/suggestions for sound-proofing???

Hi there,< >         &n bsp;       &nbs p;  Just a tip for those people with a Loop Ileostomy or a de-functioning J-Pouch ( my configuration ) . In the Stoma there are two openings, one going down to the Anus and the other exiting into the bag. Being flat in bed allows the liquid to be sucked into the wrong exit...ie..going to the Anus instead of out and into the bag. This situation causes copious amounts of fluid to exit the Anus , without any warning...very d...

Can anyone tell me how often you should change your bag.

I'm sure this questions been asked many times.... As mentioned on my profile I've put off getting the Reversal done for around 5 years.Aside from being a bit unsure of the outcome there were other circumstances too,unfortunately. I was to get it done about 2 years ago,but my dear Wife of 16 years,Tracey was rediagnosed with Metastatic Breast Cancer in June 2014,but this time it was through her bones.Straight off they said it was terminal and to expect up to 5 years She put up a hell of a fight,had 3 different chemo treatments,along with...

Hello,  I am new here, but not new to digestive malfunctions. It's finally come time to say goodbye to my colon and at this moment I'm not too sad to see it go.  I can no longer go to the bathroom on my own and my pelvic floor is all messed up from 16 years of colonic inertia.  So now I'm going to get the colon removed and getting a permanent ileostomy.  I cannot be considered for reconnection because my pelvic floor is too far gone.  I'll try biofeedback again after, but it's not looking good.  I'm here to...

I have a loop ileostomy and had the surgery due to dymotility of the gut and pseudo obstruction( no longer had any peristaltic wave to move things along ) this happened after two lots of major surgery on my spine done through my abdomen. I had the surgery done one year ago this month. The problem I now have is that I have a buildup of mucus in my back passage fairly high up and can't get it out,when I lay down I can feel it and feels like in need a BM and is quite uncomfortable, But when i sit on the lavatory the feeling completely goes an...

I currently have an ileo-anal anastomosis and will be having elective permanent ileostomy on Oct 26.  I had a temporary ileostomy back when i had my first surgery 30 years ago.  I remember how liberating it was after 3 years of full-flaring UC.  I look forward to the full liberation again as i've suffered a very painful fistula for 29 of the 30 years.  I've just bore the pain but now that the nest is empty, i'm finally taking care of myself.    My question is, will i need to alter my eating habits and/o...

Well, I've been in the Hospital now since late Wednesday night.  I had another blockage and this time the CAT scan showed another problem and enlarged intestines.  I have had bad bouts of pain since getting the first emergency surgery.  I was basically unable to eat anything without difficulty.  I have been telling the doctor for the last 5 months that something was not working right.  My output was very lose all the time and nothing like it was described.  By 7 months, I should have had a pretty decent diet s...

Hi all, on vacation in pv, ended up going through three times the supplies I thought I would.  Does anyone know of a location to buy more supplies down here? Thank you kindly

I recently had surgery to remove my entire large intestine, the surgeon then joined my small bowel to my rectum.   I am trying to balance the food/liquid problem because my bum is suffering from trips to the bathroom 8-15 times in a 24 hour period.....ouch!   Can anyone share info on vitamins/minerals etc that might help replace what i'm losing.

Hi I am new to this site and would like to find out about lossing weight. I had rectal cancer in 2007 and have had 4 opperations and this is my second Illostomy, had one for a year then had a reversal then had a year of pain they had to give me another illostomy.I have only had this Illostomy for 10 months I have been in remission for a year. I have gained some weight and want to lose it but not sure what excersises i can do. Any suggestion would be great.......Also I am still trying to deal with my illostomy haven't found a good wafer yet...

Does anyone have ileostomy & Diabetes?  Difficult to stay on a diabetic diet because of foods cannot tolerate due to the fiber.  Any suggestions? Would like to talk to someone like me.

Hi.  I had my ileostomy reversal surgery 2 1/2 weeks ago.  My abdomin is really swollen and I can't wear regular pants, only loose fitting sweats.  This swelling will go away - right?  Does anyone know how long it will take the swelling to go down? Thanks Kerry

Surgery a few weeks ago reconnected my colon eliminating an colonostomy but resulting in a temporary ileostomy. I've been seeing my medications (full pills) spilling out of my bag. I've switched to liquid ibuprofen and acetaminophen which seems to be attacking the pain- but other meds don't come in liquid form. I'm wondering if others have had this problem and what if anything you've done to ensure the medications are getting digested. I'm also concerned that vitamins are being lost too. As a side note- the surgery included a hyserectomy...

Has anyone experienced Chrohns symptons after having a illeostomy ? How was it diagnosed and how did they treat it ?

hi some1 must be to give me some advice, i had my operation september 2010, i get phantom poo pains on a daily basis but the last couple of weeks i felt more severe cramps and pain.  usually just mucus would weep from my bottom but now it seems its actual poo in my passage, i have tried to strain but the pain worsens and gets un-bearable and bleeds, has any1 had this problem? if so what did you do?,,,, awaiting any advice thanks in advance geordie casper

I've had my Ileostomy since November 2005. Everything has been going fine with the Ostomy EXCEPT. I seem to have reoccurring kidney stones. Has anyone else experienced the same problems? I drink plenty of water and try to watch what I eat but I still keep making them. Right now I have a stone (size of a peanut) in my right kidney. My Urologist  just completed blasting and clearing my left kidney with a stone about the same size. We are getting ready to start working on the right kidney. Any comments?

hello all finally had my reversal after 3 yrs. I swear I would never recommend it to anyone. I went thru so much pain and iam still recovering from it. I had it july 9th. My question is, is there anyone else who has had it done and what are some of the things they experienced. I had an infection sit in my stomach where they stapled me. I had to re-enter the hospital and they had to cut me open and drain the infection. they sent me home with stomach open and had nurses come in and do care on me and dress the wound. the problem iam having is...

I purchased a urostomy container so I can plug it into my ostomy and empty at night. I think the tubing is too small and it won't work. Are there night drainage devices for an ileostomy?

I am new to this, so I will tell my story and then see what comments are  made. Ok, well back in 2011 I was diagnosed with cervical cancer so I started chemo and radiation. I had 35 radiation and 4 weeks of chemo and also 4 internal radiation. went back to work felt fine even thru 2012. well Jan. 3 2013 my stomach started hurting severly went to dr they thought it was gall b ladder so they took it out. well I still was hurting so I ended up going to another hospital, I was there 9 weeks. They said from radiation that between my s...

hi, i just wanted to introduce myself and ask a few questions. Ive recently had surgery and have been left with (i hope) a temporary colostomy, im still trying to recover from the surgery and having a lot of concern about living with a bag. i know it will be difficult at first. i work full time, but have been off sick for 6 months already. im extremely concerned about how this will effect my work, i work in close proximity to lots of people and have reservations regarding the noise/smell from the bag. does anyone have advice about this? i...

I have questions about ileostomy done jan.2013  within a half hour after eating it starts going thru to my bag,does this happen normally?sometimes the waste in the bag is as thin as water and sometimes it is the consistency of thick gravy. it never gets anywhere near solid.when I get up in the morning I have pain in the area of the stomach and seems to come and go and is that way some days and some days are painfree. I lost weight thru this [I was a big lady 5" 6 and weighed 170 but now iam between 127 and 130 and cant seem ...

I have been reading about members irrigating and plugging illeostomy.  Have also read it is dangerous.  Please tell me more about it.  

Hello all you good people out there -- Has anyone had to have an ileostomy because of Radiation Damage? In January 2012 I had a major operation for Cancer. The operation was successful and the tumour removed from my womb. THEN I was advised to have Radiotherapy just in case?? ---I had six weeks every day Radiotherapy and started to complain of symptons from the second week. Uncontrollable diarrohea, abdo pains etc but each time told they were just side effects and would subside in time. 9 months later, no different so they sent me for a ...

I am having ileostomy revision surgery in a couple of weeks for a prolapse. I have had it for quite some time, but never caused any problems. I could go for 7 days before changing the appliance, and then looked like I could have gone longer. In the past 6 months, after 2 days it has become very itchy and leaking between the ring and my skin. Sometime, especially at night the stoma will go below the barrier, which is how the program starts, then starts to leak. After I eat, the stoma feels like it is trying to pop the barrier off, and the ...

Do you think Gluten free helps after chronic and now an illeostomy . I have read they are seeing a connection with Wheat and IBS !< >

Hi my name is Shirley.  Looking for reversal surgery experiences.  I had an ileostomy surgery 3/2016 after a failed resection surgery. Planning reversal for August. I have Crohns disease. 

Hey guys!   I just have a quick question...I'm still trying to navigate the sodomy and eating after 8 yrs of depriving myself of almost everything I enjoy because my surgeon said to stay away from them. Does anyone have trouble with gas build-up in your bag? Are their certain foods that you avoid because of gas? I have noticed that my bag fills up with air  whenever I call asleep. I have a built in filter but it still fills up. Has anyone found a way to combat that? When mine gets way full I wake up to a leak in the appliance!...

What does an Ileostomy blockage feel like?  I am experiencing really painful cramping on my upper right side of my stomach, across from my stoma.  The area around the stoma is very tender and sore but not like a skin rash sore. It is more deep inside.  Thinking it was a blockage,  I switched to liquids for a day but the stoma is putting out material into the bag.  When it empties, it is really crampy though.  I have been extra careful with my food, chewing well and not eating things that I thought would cause ...

It has been 5 months since my ileostomy and I am now having abdominal pain just above my belly button.  It really hurts when I cough.  I first thought maybe a pulled muscle but now the pain is getting worse without coughing.  Has anyone had this problem?

Hi  I've just recently had an illeostomy and have only been home 3 days. The output for my stoma seems to change a lot from really thick to quite loose. Yesterday when I got up I felt really dizzy and headaches and  felt absolutely freezing and couldn't get warm at all. I've been trying today to drink lots more fluid as was worried it might have been dehydration. Now my output has gone like diahrrea consistancy I'm wondering if it.could be a bug of some sort. Has anyone else experienced these symptoms? I' hoping I won't have to ...

Hi there,  I've had an permanent ileostomy for the past 9 years and have adapted really well.  It has freed me up to be able to really enjoy my life.  In fact, I have checked off 8 of my 10 bucket list items (involving mostly travel).  I am also a Big Beautiful Woman, 200+ and 66 years old.  I don't have any other health issues.  Having been a BBW for the past 30 years was not an issue for me when dating or marrying.   I always managed to find men who adored me.  However, I am now widowed, for the p...

Does anyone here have a continent ileostomy? I have had one since 1980, having had a conventional ileostomy for four years and deciding to have the conversion. I realize so much has changed in the options available in the last 38 years, but I was just wondering if anyone else has one? 

Hi all! shoulda posted earlier but here I am. After four months with an ileostomy (laparoscopic partial colectomy ended up being open surgery and woke up with a bag), tomorrow I am getting it reversed. I am scared and anxious, mostly because 1. The two big things that could have gone wrong went wrong last time and 2. I have read nothing but horror stories about the procedure. I had severe diverticulitis, had suffered for a year, had an abscess and perforation, spent Xmas 2016 in the hospital and spent Xmas 2017 recovering from surgery. ...

hi yall ill be 17 years old next month. this stuff is very new to me. 4/13/18 i had a surgery due to a mass on my appendix and had holes in my intestines. they removed my appendix and parts of my intestines. about a week after my surgery the incision began to leak, which turns out to be an infection. dr realized my bowels separated and put a wound vac on due to previous surgery+ decided to give me an illeostomy. i was in the hospital for 2 weeks with no issues, all the sudden, i get home today and my bags are leaking uncontrollably. ive ch...

hi all I’m a newbie.. i have crohns. I’m almost 8 weeks post surgery - ileostomy. I had major fatigue before the op and have been looking forward to starting to feel some vitality return. However I’m really struggling- I was barely able to get out of bed this week and I’ve felt so low and weaker than ever. Is this normal? I’d really appreciate any input offered. Thanks in advance ðŸ'œ

hi everyone im struggling to get my output under control after having an iliostomy at the begging of July due to Crohn’s complications. I’m wondering if anyone knows whether this rapid output has an impact on oral medications; I take HRT and antiperspirant meds amongst others. I ask because I’m feeling so utterly unwell in every way. I accept that my often way too loose output is taking its toll but I’ve been feeling so very low and having more pain, hot flushes etc which makes me wonder if I need to talk to my doc...

Hi prior to surgery in Jan 2018 i was a size 10 then due to ill health and an over abundance of steroid medication i put on 5kgs in weight. I just cant seem to shed this weight conventional dieting is no good for me as i am limited to what i can eat and when i do eat can only tolerate child size portions my 5 year grandchildren eat more than me.  Does anyone have any suggestions i cannot cope with my body image never mind the ileostomy which has put so many inches onto my hips. Comptemplating joing a gym and the services of a persona...

I had my colon, rectum and anus removed due to a diagnosis of FAP, but now they are saying that I have hundreds of polyps in my duodenum.   Is there anyone else on here who has FAP and any problems with their duodenum?  I'm trying to figure out my options but the surgeon I spoke to seemed clueless when I mentioned the PSD surgery over a Whipple.  It was rather frightening to see that I might know more than a surgeon. But thankfully I am not opposed to traveling elsewhere to get an informed 2nd or even 3rd opi...

     Hi my name is neil I have a colostomy since August 2013 I have a large lump its  hernia which is causing pain and discomfort and leaks the surgeon said he will fix the problem wants me to irradiate if that dont work as my colon ant in great shape he will give me a ileostomy dont know how well irrigation will work or how much more work a ileostomy is if you can help with anything

Have any of you folks had any trouble with losing large amounts of hair after you had your ileostomies?   My hair is falling out by the hand fulls.  The doc did check my thyroid levels and found my T4 to be 40. She raised up my medication and added a new med for the T3. She thinks it may be a problem with absorbing the drugs.  Did any of you have this issue?  How did you work with this issue?  This is very distressing to me because I have always had very healthy hair and no issues such as this.  Any suggestion...

Have any woman had liquid poop discharge from their vagina and pain in their lower abdomen? What caides this?  

Hi everyone I've had an ileostomy for the past 7years with lots of surgery since then. I've recently found out I'm pregnant 'about 6weeks'. I'm having a lot of problems with pressure on my back passage and even faceases coming out every day, which isn't usual for me so it's extremely uncomfortable. I just wondering if anyone knows if it could be related to the pregnancy even tho it's so early on? I'd be greatful for anyone's advice. keep well ostomates ❤️

I have had illeostomy for 35 years. Over the last ten years I have struggled with a large hernia at the stoma site and over the last 2 years multiple hospitalizations for obstructions. I had a hernia repair at the stoma site (fot a much smaller hernia) quite some time ago. The last time I was hospitalized the surgeons and gi folks said if the obstruction occurs again I should have surgery. They said it would be a major surgery and my stoma would need to be relocated. Would anyone who has gone through this please give me some insight o...

Annual check up the Dr stated time for colonoscopy.  My concern is the prep and getting dehydrated.  Anyone have this done and is there a different prep for us?  Only one large clinic in town that does them, called there and they called back and stated prep is same for almost everyone.  I have this nagging doubt so thought to bring it here in case it can help others as well.

Hi, I'm new to this site and would appreciate some advice from people who have had ileostomy surgery. I would like to know anything that might help me before my operation. Is it extremely painful? Should I stop eating beforehand? How long is the average hospital stay? I would be grateful for any information. Thank you and I appreciate you taking the time to read this and reply.

Have ileostomy. Still have colon. Sometimes still have small rectal discharge (poop), usually very liquid type. Surgeon said its normal due to colon still producing mucus and poop. You would think the medical field would make you aware of things like this. But they don't. Just about all ileostomy people have a discharge if they still have colon. Hope this helps someone.

Morning of Sept. 27/16: early morning had abdominal pain, vommiting; this continued to get worse over morning. By early afternoon, my wife (retired r.n. for 38 yrs.) called ambulance; could see motteling in extremeties; skin was cold & clammy. At hospital; blood work was elevated and lactic acid over 500. As afternoon went on, no control over diarrhea (couldn`t change diapers & sheets fast enough) From tests/scans surgeon thought to do with bowel. He didn`t think would make it to morning if didn`t have surgery . He thought going in...

Does anyone have problems with passing mucous plugs?     This is a new problem with me and don't know what to do.

Hi there. Can anyone comment on using a CPAP for sleep apnea with an ileostomy? I am having some problems and wonder if it is just me? Thank you! maryellen

Hi, I’m hoping I may get some advice or tips. I suffer anxiety since surgery.  I’m very happy with the surgery as it is much better than what I was going through, however I have found there are a lot of niggly issues that I have to learn about and get used to. They still have me in hospital a great deal due to complications and presurgery health issues. I have found I suffer pain right and left side of abdo back and front.  It makes me hesitant at times to eat due to significant pain after eating. At present I am on a...

I had a loop ileostomy 2/2/2017 because of colonic inertia w/ pelvic floor issues. Knowing what I know now, I would have questioned why they didn't remove the colon and do an end ileostomy at the time. We knew it would not make sense to do a take down because of the other issues, plus I'm nearly 65 so living with the pouch is easier than what I have gone through for so many years. None-the-less, it was done and I realize they were trying to be conservative. I was told the bypassed colon would continue to produce mucus and to expect it to p...

Looking for positive stories of Iliostomy reversal ( is it called takedown sometimes) because I'm very anxious about it. Had bowel resection due to diverticulitis, with loop Iliostomy. Due for reversal in 13 days. All has gone well, except for some dehydration. All healed up inside now. Had the X-ray test. Any advice very welcome . 

cant cope with sickness I do not have any obstruction bag working well but sickness and gas is getting me down any help would be gratefully received, I have sickness  tablets and  it seems every other day. I am violently sick. Up to 6 years ago I was a strong healthy man but now feel 90 years  of age any advice  PLEASE 

Hi for 1 week I have been trying to replace my breakfast and lunch with a protein shake (Garden Based) so there is alot of fiber in it and then at dinner time I am eating a sensible meal.  Plus the doc recommended I do Miralamax everyday to make my bowl's more consitant.  However my output still seems to be not good, not sure if maybe my body is not use to it and it is adjusting.   My question is, is this healthy for me to replace breakfast/lunch with a protein shake? Also do you recommend a protein powder that maybe...

So, I could use some feedback here please!   I was diagnosed with colon/rectal cancer last year.  I went through all the fun stuff and had surgery to remove the cancer in January 2018.  In April when I was supposed to ahve the reversal the Dr said; "There was a small hole in your colon and a small pouch developed.  I can't do the reversal until enough scar tissue forms." He went in and cleaned up the mess that the previous surgeon had made.  I was also told it might not ever heal enough to have a reversal.&n...